Help Wanted: Mental Health Provider, Autism Experience Preferred

The mother thought she had hit the trifecta. She found an outpatient mental health clinic that 1) would see her teenager with autism, 2) was in her town, and 3) participated in her insurance plan. As a bonus: the clinic was affiliated with a psychiatric hospital in another city. Now her teen could get some help with mood and behavior problems.

But when the mother showed up for the first appointment, a social worker at the clinic had bad news. She does not treat youth with autism, she said. In fact, no one else there could help. The best she could do was give the mom the name of a local parent support group, although the mother was already a member. It would take a few years – and a broader search outside her town – to find a psychologist and psychiatrist comfortable treating teens with autism spectrum disorder (ASD) with emotional or behavioral problems.

This mother's experience is not unique. Among parents of children with various special needs, those whose children have autism report the most difficulty finding mental health and therapy services for their sons and daughters, according to a study by two researchers at Brandeis University.1 That is concerning because mental health problems are common. A "majority" of people with autism have a separate psychiatric disorder, such as anxiety, depression, mood disorder, or Attention Deficit-Hyperactivity Disorder (ADHD), according to several research studies.2

Barriers to Health Care in Autism

To be sure, many problems can hinder a family's ability to obtain health care, including insurance restrictions, cost, the shortage of specialists in some communities, and transportation. But there's one area where children with autism seem to stand out from other kids with special needs: finding mental health providers trained in their care, according to the Brandeis study. These findings were based on data from a 2005-2006 U.S. national survey of 40,700 children with special health care needs.

Almost 14 percent of the ASD parents said a mental health provider did not know how to treat their children. By comparison, only 4 percent of the parents of children with other health care needs said the same thing.1 Not surprisingly, the autism parents reported the most dissatisfaction with their children's mental health providers.

Parents aren't the only ones who are frustrated. A survey of 100 therapists in community mental health clinics in California found that many therapists found it "challenging and frustrating" to treat children with ASD because they have "very limited training with this population."3

Other health care professions also may be affected. Child psychiatrist Matthew Siegel sees a need for more autism training for practitioners in many fields, including medicine, speech-language pathology, occupational therapy, and behavior therapy. "It's true of all those professional disciplines, but it's very true of psychiatry," said Dr. Siegel, a principal investigator with the Autism and Developmental Disorders Inpatient Collaborative who also is involved in the Autism Inpatient Community.

A committee of the American Academy of Child and Adolescent Psychiatrists (AACAP), a professional organization, agrees. It recently found that the amount of training that future child psychiatrists receive in autism and intellectual disability appears to be "inadequate."4

A Simmering Problem: Developmental Disorders and Psychiatric Training

The American Psychiatric Association has been concerned about the need for psychiatrists to be trained in developmental disorders for years. "There has been this awareness that there weren't enough practitioners who knew autism and intellectual disability very well," said Natasha Marrus, M.D., Ph.D., a child psychiatrist.

A psychiatric association survey in 1991 found that almost all state mental health/intellectual disability facilities struggled to find psychiatrists, in part because many of those doctors lacked "sufficient training" in intellectual disability.4 "In many places the training is minimal, limited to a few hours of lectures, while clinical experience, if any, is elective or depends on the chance of encountering [intellectually disabled] patients," said the Report of the Task Force on Psychiatric Services to Adult Mentally Retarded and Developmentally Disabled Persons. In fact, 8 percent of the child psychiatry programs, and 30 percent of adult programs, reported no training at all in intellectual disability. The 1991 task force urged fellow psychiatrists not to regard these patients as "just another exotic group clamoring" for their attention.5

So almost 20 years later, Dr. Marrus and a committee of AACAP members repeated the survey, this time also asking about autism training. The panel sent the web-based survey to the directors of 124 child psychiatric training programs in 2009.

The survey team found improvements. All child psychiatry programs surveyed provide training in autism and intellectual disability. Although these conditions are no longer regarded as "exotic," most training programs don't devote much time to them. On average, doctors in psychiatric training programs sit through three hours of lectures in autism, and see just one to five patients a year with autism or intellectual disability, according to the survey report, published in Autism in 2014.4

Most of those patient visits are for medication. Experience in psychotherapy, which involves talking about problems, was "even less common"; 47 percent of the directors said their trainees had no experience in psychotherapy for ASD or ID.4

The Challenges of Training: Resources

A sizable number – 43 percent – of the psychiatric training programs wanted more resources. In particular, the directors of those programs complained of a shortage of specialists, the lack of developmental disabilities clinics where their trainees could gain experience, and limited funding.4 "This population deserved a level of specialization, but there just weren't the resources to deal with it," Dr. Marrus said.

Some training programs may not have faculty with expertise in autism, enough patients with autism, or access to autism experts in related fields such as behavioral psychology, explained Roma A. Vasa, M.D., training director and associate professor of psychiatry and behavioral sciences at The Johns Hopkins University Medical School. Future child psychiatrists in the Hopkins program receive "exponentially" more training by working in clinics for autism and developmental disorders at the nearby Kennedy Krieger Institute, she said.

But the biggest problem facing many American families is finding any child psychiatrist in their hometowns, let alone one experienced in autism. "There's a dire shortage of child psychiatrists," said Dr. Vasa, a member of the AACAP Autism and Intellectual Disability Committee and child psychiatrist at Kennedy Krieger.

Many counties throughout the southern, midwestern and western United States have only one child psychiatrist, or none at all. The U.S. has only about 8,300 child psychiatrists for more than 15 million children and teens who need to see one, according to the AACAP.6

Looking to Other Specialists for Diagnosis and Care

Fortunately, psychiatrists are not the only health care providers who diagnose and treat autism. Pediatricians, developmental-behavioral pediatricians, neurologists, speech-language pathologists, and psychologists also do so, ideally as part of a team, some experts say.

"You don't need a psychiatrist in every case to recognize a diagnosis," said Dr. Marrus, a child psychiatry instructor at Washington University School of Medicine in St. Louis. Some children have obvious symptoms, and "if the pediatrician has seen enough children who have autism, he or she can give a diagnosis."

Any physician may prescribe "psychotropic" medications, that is, those drugs that change a person's mood or behavior, but psychiatrists generally have the most training and experience in managing these types of drugs. The U.S. Food and Drug Administration has approved only two drugs for autism; both are antipsychotic medications used to reduce irritability in children ages 5 and older. There are no drugs yet to treat the core symptoms of autism – communication and social problems, and repetitive behaviors. However, drugs that treat hyperactivity, depression, anxiety, or mood disorders are prescribed to people with autism who also have those psychiatric conditions.

From 35 percent to 56 percent of children with ASD are taking at least one psychiatric drug.7, 8 Psychiatrists, pediatricians, and neurologists often do the prescribing, Dr. Marrus said.

Regardless of the provider, training in autism is important because children with ASD often require special attention to factors that may fuel challenging behavior – and influence treatment, Dr. Vasa said. Those may include medical problems, frustration caused by limited communication skills, sensory problems, and inadequate support at school, she said.

Treating Children with Severe Autism

Who is going to take care of these children when they become adults? Where are these patients going to go?

Dr. Siegel said children with severe autism have the strongest need to see a psychiatrist. "The more severely affected kids tend to have co-occurring disorders like depression, anxiety, ADHD, or more serious conditions like psychosis. They really need a psychiatrist who can assess and treat that," he said. However, it may be hard to find psychiatrists skilled in severe autism outside the cities and university centers where specialists tend to cluster, he said.

"They don't appear out of thin air," he said. "We have to train them. We have to set up fellowship programs, as I and others have proposed, or shorter professional training opportunities so we can increase the workforce," he said.

Dr. Vasa is part of an AACAP subcommittee that is developing a curriculum in autism to be distributed to child and adolescent psychiatry training programs in one to two years. In addition, four centers from Maine to California are working together to promote their one- to two-year training programs in autism and developmental disorders for psychiatrists, Dr. Siegel said.

But then what? The number of children diagnosed with autism has risen dramatically in the last 20 years. Those soon-to-be adults may be seeking psychiatrists who treat adults one day. "Who is going to take care of these children when they become adults? Where are these patients going to go?" Dr. Marrus asked.

Her panel of doctors tried to find out how much training adult psychiatrists receive in autism and intellectual disability. They sent a survey to the directors of 182 general (adult) psychiatric training programs. However, few people responded, and their surveys were ignored because they would not be statistically valid. Dr. Marrus noted that one director commented: "Is this really an important topic?"

So How Do You Find a Mental Health Provider?

Many people ask their primary care doctor for referrals to a mental health provider. Your doctor also can help you decide whether you need to see a psychiatrist, psychologist, certified behavior analyst, clinical social worker, or licensed professional counselor. (Generally, only physicians, physician assistants, and certain nurses can prescribe medication).9

You can ask other people with autism, or parents of children with autism, about their experiences with certain providers. Your health insurance company can tell you which providers participate in your plan and explain coverage. See the Additional Resources section for online directories of providers.

Of course, don't be shy about asking potential providers about their experience and training in autism.

The Behavior Analyst Certification Board allows you to check the credentials and contact a Board Certified Behavior Analyst (BCBA). Behavior analysts can help with deficits in communication and daily living skills, and problem behavior, such as aggression and self-injury, according to the certification board.

Some U.S.-based advocacy groups have lists of providers who have agreed to be included. They include the Autism Society of America and Autism Speaks. Those organizations say they do not endorse anyone.